My name is Bruce and I am 55 years old, married for twenty-eight years with two children. All of who are HCV negative. I live near Centralia, Missouri on a small farm. I was misdiagnosed with Hep B in Germany in 1974. (They never tested me and I have no antibodies ..hmmm..) I was in the army at the time. I was hospitalized for 45 days and then told I was cured. In Nov. 1989, I went to the ER with chest pain and weakness. I wasn’t having a heart attack, but a bout of liver pain. My ALT was greater than 1000. The Dr. I was referred to, had just returned from a seminar on Hepatitis and he tested me for hepatitis C. He had heard about the Interferon trials. I started the trials in Jan. ’89 and spent the next year and a half on and off Interferon. I did well while on it, but relapsed within a few weeks of stopping. In 1997, my Dr. put me on Interferon for a year. My viral load was greater than five million and I had periportal bridging and mild cirrhosis. And I did another year of Interferon. I was responding, but 2 weeks after I stopped the interferon my viral load leaped up to 2 million. The combo, (interferon and ribavirin) was approved on July 18th and I started July 20th 1998.
While I was on combo I had a variety of sides to include fatigue, anemia, depression, joint pain, weight loss and other flu like symptoms. One of the worst sides was my extremely short temper. Luckily, I have a great family and they put up with me. After the first few months, these sides were greatly reduced except for the anemia. I couldn’t walk up a flight of stairs without getting out of breath. I always took my shots right before I went to bed and that seemed to help.
On May 30, 1999 I stopped the combo and my enzymes are still normal and my viral load on July 1, 1999 was non-detectable. Today I remain virus free. It has been over 4 years now. So Far So Good! I have had several biopsies. When i was first diagnosed I had mild fibrosis and mild scarring, that was in 1989. In 1997 it had advanced to Grade 2 inflammation and Stage 3 fibrosis. I had a liver biopsy Dec. 2002, 3 1/2 years after treatment and it showed no inflammation and stage 1 fibrosis! A big change from the periportal bridging I had 5 years ago!
I am not positive how I got infected. I did have a couple of risk factors. In September 1973 I received the Army vaccinations with the “jet injectors” and in December, I used IV drugs, so, which came first, the chicken or the egg?
I am a Medical Technologist (I work in Molecular Pathology, where I do the PCR testing for Hep C). For the last 5 years I have been a patient advocate, an and active in a number of non-profit groups. I started with the United States Hepatitis Alliance as a State Chairperson. I later became the President. In 2000 the group dissolved and I joined Frontline Hepatitis as Vice President. In December 2001, I left Frontline and formed my own not for profit corporation, Missouri Hepatitis C Alliance. We now have 3 support groups going: Columbia, Jefferson City, and Osage Beach Missouri. All of the groups I have worked with have been national and many national groups formed the National Hepatitis C advocacy Council (www.hepcnetwork.org).
It is now March 2004 and I am still virus free. I have joined forces with RAIN of Central Missouri to provide funding for free testing and assist with treatment services for the uninsured in central Missouri. I am working full time with people affected by HCV and traveling the state providing education to the general public.
April 2007 I moved into a new office and MOHCA was up and running. We are still providing educational presentations, (86 this year!) and free testing. I was elected as a steering committee member for the National Viral Hepatitis Roundtable (www.nvhr.org).
April 2008, more grants coming in and we are still offering free testing and education presentations. This year I have also traveled around the country providing in services to Methadone clinic staff. Lots of travel and fun.
December 2009. Funding is getting tighter and we are now offering some free testing and low cost testing. We are charging $9.00 for an antibody test. We held 107 presentations and tested 944 people and found 192 positive for HCV.
April 2010. Funding is looking up and we are resuming free testing in some areas. We will be moving into a larger office in June.
